• Tag Archives Autism/Aspergers
  • HOW ARE ASPERGER’S SYNDROME AND AUTISTIC DISORDER DIFFERENT?

    The real question should be:

    “HOW ARE THEY THE SAME?”

     

    I was drafting a response to a comment by an amazing woman named Hilary who had taken the time to offer her insight and share personal accounts in reply to some of the things I have written when it occurred to me that she was addressing common sentiments I have read time and time again.  Ultimately, I decided that perhaps it would be better served to create a post addressing these comments in lieu of simply replying to her.

    How and why do I think Aspergers and Autism should be separated at this time with our current comprehension of all-things-ASD?  I am going to launch into some seriously obnoxious rants about neuroscience from my current level of comprehension to help answer why I am such a staunch advocate for this.

     

    I apologize to anyone who is an actual neuroscientist for I will most certainly dumb-down and trivialize what you understand and possibly motivate you to provide more articulate education on the subject matter.  You are welcome to do this (and I think you are badass and envy your level of intelligence and chosen profession) but there is a good chance the readers will be equipped with the same capacity to grasp something so complex that I am and your words will fly far over our heads!

    First, (and most important) I need to give credit to Hilary who inspired this post by sharing what she wrote in reply to my (thus far) controversial opinions and unfiltered slaughtering of the DSM-5 diagnosis of Autism Spectrum Disorder:

    “Having Asperger’s comes with sensory issues that are not going to respond to medication or therapy with a mental health professional. These sensory processing issues cause a lot of problems with perception and get in the way of functioning. Also the muscle memory often doesn’t work well with Asperger’s so things like hand writing just do not improve with time or practice the way it would for an NT. How is a mental health professional going to address things like this? We have had to make so many accommodations to daily life in our home to function well, because of that I am thankful that Asperger’s is lumped with Autism. I was in counseling for a long time, it did no good. Also, antidepressants had a terrible outcome. There are environmental changes which once they’re made, make it much easier to function normally, then the symptoms are decreased and the person can progress. Counseling could help provide coping techniques, but the sensory issues that are at the heart of Asperger’s need to be addressed. There are also so many physical medical conditions that contribute to or result from Asperger’s- both of my children wear glasses, have hearing issues, gastrointestinal issues, sleep problems, etc. that when we treat one of those, they are more able to function emotionally and socially. Psychiatry can’t touch those and they have a major impact on where they’re at on the spectrum.

     I hear how upset you are and I’m sorry that this is so frustrating. I feel angry a lot too. I see your points, and they are valid. It’s quite possible that I don’t understand you fully, I don’t understand the technical aspects of this. All I know is that with getting help for my children, their medical and sensory issues have to be cleared up if we want to make lasting changes to the social/emotional parts. Just the sleep disturbances/breathing problems alone cause so many meltdowns during the day. Both are high functioning and you wouldn’t realize that they have so many medical issues, but they do. The blanket term Autism, helps us to look at these problems as part of the whole. Mental illness also goes hand in hand much of the time just because of how stressful growing up with Autism/Asperger’s is and how people treat you when you have it. It can start to overshadow the true problems, which if cleared up would help a lot. 

     One final thought- the DSM is based off of and changes with social norms. Being gay used to be in the DSM along with many other things that we no longer consider to be mental illness. I share your anger in the money that is being made off of the people who are suffering. A lot of money is made off of people believing that something is wrong with them. More understanding, love and patience would be a good thing all around. Our society makes me sad and I don’t put a lot of stock in these labels. People intrinsically know when they aren’t loved for who they are and it causes all sorts of odd behavior. Much can be avoided if we understand that we cannot change another person and instead meet them where they’re at and love them unconditionally.”

     

     First, I absolutely appreciate her words and agree with the comment that we should accept one another as we are and love them unconditionally.  I will disagree with the fact that I believe we should try to change some things about people.  We can change, all of us, in various ways to become our very best selves in life and in relationships (not that she was suggesting against this).  I want to change my husband’s negative behaviors and I am hell-bent on doing so, even if that means I am an unaccepting jerk to others.

    Ok, so I am a self-proclaimed ADHD sufferer in need of some serious medication, so you may imagine what rabbit holes my brain took me down after reading her comment.  After a lot of effort to ground myself (sort of) I was able to organize some degree of structure to address her words:

    I wonder if those who can share these feelings (their spouse or children) were ever receiving counseling for an Aspergers or Autistic diagnosis by a professional who specialized in one of those “disorders” (I HATE that word!) before the DSM change grouping it all under ASD?

    I would be interested to hear from those who could give examples of how the therapeutic benefit of the ASD focus provides better assistance then having the two treated separately. Unfortunately, I doubt if there are many who can provide this example because the challenge to even find someone who specialized in Aspergers was so difficult (easier in the U.K. and Australia then the U.S. though) before and now in the U.S. is near-impossible.

    Since I am a believer that Aspergers should be treated by itself, I find it hard to see a benefit to the professional who is in favor of merging the two together.  It was mentioned that neither counseling nor medications ever benefited the commenter personally.  While I am always sorry to hear that, I am sadly not surprised.  I think in regard to counseling, most are/were never given the opportunity to see a therapist that was truly knowledgeable about how to help them in the first place (if they do have or warrant an Asperger diagnosis).

    As for the medication to treat Aspergers; useless.  If it is not a hormonal or chemical imbalance causing the problems experienced but just a different processing ability within the brain that is hard-wired from before birth, those medications COULDN’T HELP.

    SCREW YOU PHARMACEUTICAL COMPANIES!!!

    Unless science figures out the neurological mapping and/or medications that can awaken parts of the brain that are not active, or connect specific identified pathways that are affected in Aspergers/Autism vs. NT cognitive processing, the medications out there being recommended are going to continue to be useless.  I strongly believe this but unfortunately, I cannot back my words with scientifically proven facts since few find it worthy of investigating further.  Medications are only beneficial after the unnecessary stress of needlessly trying to adapt to another way of thinking causes so much emotional turmoil to an Aspie adult that a medication may provide relief in numbing some of it.  Even then, I am suspicious of how an antidepressant that targets chemicals within the brain is going to help an Aspie who may have a differing baseline than the majority-NT’s they were originally studied to help.

    While I do believe the sensory issues sometimes common to both Aspergers and Autism can be effectively treated with similar behavior and environmental interventions, I do not think the social ones can be.  Often people forget that these exact same sensory issues Aspies have (not those with Autism) are also something that NT’s experience very frequently, so I have not been convinced they are as linked to Aspergers or each other as the professionals are suggesting.  I think it is more of the way the resulting stress of those sensory issues outwardly present themselves in those with Aspergers that keeps mistakenly highlighting them as symptoms of the disorder.  Regardless, they should not be managed the same way by a mental health standpoint since the cognitive processing is likely to be so different.

     

    Here I go on my tangent about the human brain from my basic understanding…

     

    HOW IS INFORMATION PROCESSED IN THE BRAIN?

    An individual’s brain contains approximately 100 billion nerve cells referred to as neurons.  There are upwards of 10,000 synapses that connect one neuron to another (give or take a few thousand) and one neuron can be connected to 5,000-200,000 other neurons.  Glia cells are the cells that support neurons and can clean up dead ones, or enhance the function of active ones.  Neurotransmitters are the chemical mediums by which signals flow from one neuron to another.

    HUH?

    Imagine that I am holding a landline telephone in my hand (neuron) and I am attempting to share a one word response to someone’s question who lives across the globe (who is also holding a landline telephone in their hand), but it takes 10,000 different wires (synapses) to get my message to the other side of the world.  These wires (synapses) can effectively send my message to the other person, and also enable upwards of 200,000 thousand other people holding a landline telephone in their hands to hear it the very moment I dial the number and an electrical current is transmitted through them (neurotransmitters).  Enabling these wires to function are thick cables surrounding them that protect my transmitted message and keep it whole, as well as countless humans working to clear them of debris and rid faulty or broken cables along the way that could affect the pathway (glia).  Now consider that if you cut even one of those wires, the word on the other end may be received garbled or it may be a different word with the same meaning to the one I spoke, or an entirely different and opposing word altogether… OR… it comes across in a different language!

    TRACKING??

    Hopefully now you have my elementary understanding of how messages are sent and received in the brain.  Let’s move on to the structure and function of the brain now.

      

    THE INCREDIBLE AND POORLY UNDERSTOOD HUMAN BRAIN

    Your brain is housed inside of a thick skull (laughing at myself) on top of your awesome body.  It is comprised of the cerebrum, cerebellum, and brainstem.  The cerebrum is the largest part with left and right hemispheres that control the opposing side (ie, if you jack up your left side the right side of your body will be adversely affected and vice versa).  The cerebrum is the ultimate controller of functions like vision, hearing, speech,  learning, sensations, reasoning, emotions, and fine motor movements.

    The cerebrum is where the differences exist in Asperger’s syndrome and Autism!

    The cerebellum (underneath the cerebrum) is our controller of posture and balance because it determines all coordinated muscle movements.  The brainstem is our life (without the other two we could still technically be alive) as it controls breathing, heart rate, thermoregulation, digestion, swallowing, sleep/wake cycles, etc.  You might now be seeing that the cerebellum and brainstem likely play a role in the the Autism-related “medical” issues, but they do not play a role in the Asperger ones (or lackthereof) at the same frequency despite the professionals who keep calling them symptoms of both disorders. The medical issues associated with Autism may have root causes in the cerebrum as well, but in Aspie and NT individuals, the likelihood of problems stemming from the cerebellum and brainstem are equal.

     

    It is a *KARA-FACT* that the the cerebrum is 100% accountable for all things Aspie/NT!

    As a nurse on an acute care multi-service unit that sees every imaginable patient from infant to elderly, I spend the majority of my time preoccupied with all-things related to the cerebellum and brainstem, often at the saddening exclusion of the cerebrum (despite having psychiatric patients and every patient warranting cerebrum-related attention).  Because of this and the daily frustration I have at medical professionals bypassing the cerebrum in general (within the context of acute care), I haven’t any interest in discussing those parts of the brain in any of my blog posts.

    I mentioned that the right controls the left and vice versa, but this is not entirely the case with all functions.  As a general rule, the left hemisphere controls writing, speaking, comprehension, and even the ability to do math. The right is where artistic/musical ability is controlled, empathy and behavioral characteristics, personality and creativity.

     

    CEREBRAL HEMISPHERES: GETTING DOWN TO THE NITTY GRITTY

    There are four divided lobes that make up the two cerebral hemispheres, the frontal, temporal, parietal, and occipital (and these have further divisions I won’t get into).  All of these lobes share varying complexities in how they work together and serve to promote or sometimes inhibit the others.

    The frontal lobe mainly serves to control judgement, problem solving, intelligence, concentration, speech, body movements, and writing.  It also controls behavior, emotions, and self-awareness.  The Parietal lobe controls language interpretation, spatial and visual perception, memory, vision, hearing, and sensory functions like touch, temperature, and pain.  The occipital lobe interprets vision in regard to movement, light, and color and the temporal lobe is the part responsible for understanding language, hearing, memory, sequencing and organization.

    There is a term called Brain Lateralization whereby neural functions (cognitive processes) are more dominant on one side of the brain or the other.  I am sure you have seen images of the brain in your lifetime that show two distinct chunks (the right and left hemisphere) that look like they could be split apart without much effort.  If you’re having trouble visualizing it, here it is:

     

    330px-Cerebral_lobes
    The human brain depicting the separated hemispheres (Gutenberg Encyclopedia)

    The two hemispheres are connected by a bundle of nerve fibers called the corpus callosum. If you took away this bundle, the brain would not be able to communicate between hemispheres, something that has been done in history to treat severe epilepsy.  In these procedures, corpus callostomies were performed and very large portions of this bundle were removed entirely (these patients were called “split brain” patients).  It was in the study of these split brain patients that science was able to definitively identify what hemispheres controlled what functions for the majority of the world, and further brain mapping research has made this unarguable science at this time.

    Theory of Mind and Empathy have long been believed to stem from the frontal lobes (predominantly in the right frontal lobe) and this has been proven with repeated results throughout historical studies (http://brain.oxfordjournals.org/content/124/2/279).  If you research the Mirror Neuron System you will come to find that there is a general agreement amongst the scientific community that Asperger’s syndrome shows a marked impairment within these areas of the brain (predominantly within the right frontal lobe).  Men already have asymmetry in their brains (with greater use of their left hemisphere) when compared to females, so an Aspie male is genetically challenged in the areas of right-brain thinking from the very start and further compromised by their syndrome.

    brain lobes
    http://www.md-health.com/Lobes-Of-The-Brain.html

    I already mentioned the neuroscientist Dr. Frank Duffy (See: WHAT DOES AUTISM SPECTRUM MEAN?) who was able to show that the brains of an individual with Aspergers and one with Autism were very different with the use of electroencephalogram comparisons.  What I did not mention is that the children with Aspergers were shown to have much more neural connectivity in the area of their left hemisphere than the right when compared to both an Autistic and NT child.  On MRI scanning there were very distinct differences in the brain of an Autistic individual and one with Asperger’s Syndrome as well.

    The best imaging study I found in regard to a comparison between both Autism and Aspergers was published in the Journal of Psychiatry and Neuroscience in 2011.  In this meta-analysis of MRI studies the distinct variations in affected parts of the brain are conclusively identified and they do NOT show that the two are the same.  While there are some lobes of the brain that show some minor overlap, they are few and far between when one looks at the differences.

    For instance:

    “Only for studies of Asperger syndrome did we note clusters of grey matter volume excess relative to controls to be primarily located in the left hemisphere, medial temporal lobe and inferior parietal lobule, with only 1 cluster of grey matter excess identified in the right hemisphere in the inferior parietal lobule.”     http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3201995/

    Again, we are seeing/hearing that the “problem” associated with Asperger’s syndrome lies within the right hemisphere of the brain, whereas the Autistic brain shows differing parts of the right and left hemisphere with only a few similarities.  What was the ultimate conclusion of this incredibly valid and peer-reviewed study?

    “An ALE meta-analysis of grey matter differences in studies of Asperger syndrome or autism supports the argument against the disorder being considered solely a milder form of autism in neuroanatomic terms. Whereas grey matter differences in people with Asperger syndrome are indeed more sparse than those reported in studies of people with autism, the distribution and direction of differences in each category is distinctive. Asperger syndrome involves clusters of lower grey matter volume in the right hemisphere and clusters of greater grey matter volume in the left hemisphere. Autism leads to more extensive bilateral excess of grey matter. Both conditions share clusters of grey matter excess in the left ventral temporal lobe components of the extrastriate visual system. This summary of a rich VBM MRI data set has important implications for how we categorize people on the autism spectrum and cautions that mixing individuals with autism and Asperger syndrome may at times obscure important characteristics manifested in one or the other condition alone.”  

     (J Psychiatry Neurosci. 2011 Nov; 36(6): 412–421)

    If the right hemisphere has a higher level of control over cognitive empathy, (and other areas shown to not be functioning “normally” in Asperger’s syndrome)… could it be that the very neural pathways required to process cognitive empathy are simply not there at all?  I highly believe this to be the case, but that is as far as the scientific data can take it at this time so my theory (See:  WHAT ABOUT EMPATHY?) will have to wait to be proven true.

    Aspergers-brain MRI

    I digress… Ok, so neuroscience appears to repeat the sentiments that the two are not the same.  Yet here we are with them grouped together and no further funding put toward the isolation and study of Aspergers in and of itself.

    According to Autism Society Org., the five major warning signs of Autism are:

    1. Does not babble or coo by 12 months
    2. Does not gesture (point, wave, grasp) by 12 months
    3. Does not say single words by 16 months
    4. Does not say two-word phrases on his or her own by 24 months
    5. Has any loss of any language or social skill at any age

    These are the medical conditions very frequently associated with Autism:

    • Gastrointestinal problems (Chronic constipation and diarrhea)
    • Low muscle tone
    • Seizures
    • Pain threshold abnormalities (Very high insensitivities or sensitivities to pain)
    • Pica (Eating of non-food objects)
    • Immune System Problems (Allergies, rashes, ear infections, chronic autoimmune problems)
    • Low IQ
    • Severe Sensitivities (Chronic reactions to taste, sound, light, textures, etc.)
    • Sleep Disturbances
    • Vision problems
    • Hearing problems

    Well, we already know the major warning signs of Autism listed above do not apply to Asperger’s syndrome since impaired language is what everyone claims sets them apart.  All of the listed medical conditions are not surprising when you look at the brain areas affected in a child or adult with Autism.  These are not common to an Asperger child or adult any more than they are to someone considered Neurotypical.  Yes, there are exceptions and some Aspies say they have similar medical problems, and there is no doubt they do.  With them though, these could be related to medications commonly prescribed to an Asperger child/adult (ADHD medications alone can cause gastrointestinal and sleep disturbances) as can the antidepressants they often receive which would certainly make their medical symptom prevalence appear similar.  They can also have zero connection at all to do with the neurological deficit causing aspergers and everything to do with genetic mutations and environmental exposure… just like every other medical condition out there for neurotypicals and aspies alike.

    Aspie men and women have normal to above normal IQ’s.  When you find an Aspie with a low IQ, it would make sense to consider High Functioning Autism over Aspergers (in my opinion).  The problem with Aspergers and why it was lumped into Autism despite all diagnostics showing a distinct difference in the parts of the brain affected, once again, is because the professionals had inconsistencies in diagnosing it.  It is not, and never has been because the two are the same.  It truly is because those entrusted to identify them as separate could not get on board with the data and research and accomplish this!  Due to the overlap in some of the symptoms in High Functioning Autism and Aspergers, everyone just threw their hands up and chose to deem them synonymous.

    At this point in time, the only shared deficits or behaviors between Asperger’s syndrome and High Functioning Autism are the focus on special interests and impaired social communication (and even those can be differentiated when analyzed closer).  Despite this fact, there is a constant claim that it is near-impossible to differentiate between the two.  Of course there is an incredible difficulty doing this right now, they opted to stop moving forward in research to break them apart, and the confusion that exists now (which was already bad) is getting worse with the DSM-5 putting them in the same diagnostic category.

    While no one can appear to agree on the cause of either disorder, it is generally accepted that Autism has a link to both genetic and nongenetic (environmental) roots.  Even Nationally recognized groups that serve to educate the public about Autism agree with this.

    “A number of nongenetic, or environmental, influence further increase a child’s risk. The clearest evidence of these environmental risk factors involves events before and during birth. They include advanced parental age at time of conception (both mom and dad), maternal illness during pregnancy, extreme prematurity and very low birth weight and certain difficulties during birth, particularly those involving periods of oxygen deprivation to the baby’s brain. Mothers exposed to high levels of pesticides and air pollution may also be at higher risk of having a child with ASD. It is important to keep in mind that these factors, by themselves, do not cause autism. Rather, in combination with genetic risk factors, they appear to modestly increase risk.”

    https://www.autismspeaks.org/what-autism/faq

    There are no indications whatsoever that Asperger’s syndrome has anything but genetic foundations that develop when the individual’s brain is initially forming in utero.  There are no links between those appropriately diagnosed with Aspergers and any of the common environmental associations observed in Autism.

    I find it telling that the very people who have spent over 50 years working directly with and for Autistic individuals and raising awareness of Autism appear to want the two separated.  Perhaps many people miss the statements within these national and global organizations that suggest this.

    “We applaud the National Institute of Mental Health and its director Dr. Tom Insel, who has chosen not to place so much weight on the DSM-5 diagnosis categories. NIMH will not use DSM categories as the “gold standard” and will begin moving away from an exclusive focus on symptom-based categories.”

    http://www.autism-society.org/what-is/diagnosis/diagnostic-classifications/

     

     CAN THE BRAIN BE FIXED?

    When a child or adult learns how to do anything, their brain is literally creating neural pathways (messages sent along synapses) to make a permanent connection to later retrieve this information.  You are creating neural pathways as you read this silly blog post.  The more a subject is repeated, the more synapses connect, creating something that can conceivably become automatic over time.  This is exactly how cognitive-behavioral therapy works.  Individuals are taught to look at something new, or in a new light, and then repetitious reinforcement, coupled with positive associations, develop behavioral modifications that can and often do become permanent (although not unalterable).

    Neural pathways determine neurochemicals, or the strength of the information passed through synapses.  Medications temporarily change the chemistry of the “strength” of the messages sent to and from neurons, but they cannot, I repeat CANNOT change the pathways themselves.  What does this mean?  It means if a pathway does not exist in the first place, or the neurons are not present on one end or the other (or both) to even transmit or receive these messages… there is no amount of medication that can create them.  There is no way to medically help a person with Aspergers to develop cognitive empathy if the neurons and synapses associated with them are absent to begin with!

    This is why chemical intervention and treatments are a cruel promise that will never deliver to the parents of children with Aspergers or the Aspies themselves.

    There is this thing called neuroplasticity where the neural pathways in the brain are believed (and fairly well-proven) to remain changeable throughout a person’s lifetime.  Cortical remapping has been proven in response to injury whereby the damaged part of the brain develops new pathways to re-establish functions thought lost with damage sustained to the brain.  These brain changes can be in the neuron (messages) themselves (non-synaptic plasticity) or the synapses/pathways that transmit data to and from the neurons (synaptic plasticity).

    This is important to me because there appears to be a very high likelihood that the deficits observed in Aspies have caused a more pronounced use of some other parts of their brain!  

    In other words, the same amount of neurons seem to exist to that of an NT brain, but the neurons disconnected from sending messages to the areas that handle emotional reciprocity, Theory of Mind (ToM), and empathy have instead lead to more connectivity in other areas of the brain.  I also believe strongly that those with Asperger’s have affective empathy, but without the cognitive empathy to build that over time, the synapses are existent but the neurotransmitters have opted to be utilized elsewhere (giving the appearance of ZERO empathy).  Perhaps these more active neurons (in places that do not control empathy) accounts for the increased sensitivity to light, sound, textures, etc.? Perhaps this accounts for the higher level of intelligence in logical processing or extreme focus on objects?  This could be said for Autistic deficits as well, only their affected neural pathways are far vaster than that of an Aspie and likely account for the wide variation of deficits observed in more severe forms of the disability.

    New trials are underway with some proven success in neuro-therapy to utilize brain stimulation techniques that aid in the recovery and treatment of stroke and schizophrenic patients.  While I am struggling to find research on any trials of implementing this on Asperger or Autism affected individuals, it is something that certainly warrants attention.  Exciting as this sounds, it seems that there would be a higher rate of success in working with autistic individuals who appear to have more deficits in parts of the brain that could target hemispheric transference.  Since the male Asperger brain seems to be entirely lacking of synaptic connections within many right brain-dominant areas controlling empathy, there may not be a way to create synapses that simply do not exist.

    If it is true that female Aspies have more synapses connecting their neurons within the parts of the brain that function to create affective empathy maybe neural stimulation could enable them to develop even greater empathetic intelligence over time.

    If there is to be any real hope in regard to the treatment of Asperger men, it would be through the utilization of either cognitive behavioral therapy or neural stimulation.  I highly doubt there exists an opportunity to ever create true cognitive empathy in an Aspie because I do not believe those neurons exist in those specific areas of the brain (PLEASE, SOMEONE DISCOUNT THIS!!!).  I do still believe there are a billion other neurons in the Aspie brain whose synapses can be modified to enhance all of the other forms of communication that DO readily exist.  I believe that honing in on these available neural synapses can better serve the Aspie within the context of interpersonal relationships.

    GOING BACK TO THE ORIGINAL INSPIRATION BEHIND THIS POST

    In regard to the question that Hilary posed about how psychiatry is going to help with the other deficits associated with ASD; I can only say that it would first require teasing out whether or not the child or person has Autism or Aspergers in the first place.

    There is no way to specifically address the needs of any child or adult if there is no real understanding of what neurological deficits exist and require attention.  Many of the other medical issues she mentioned in her children appear to indicate that they may have Autism, albeit, the “higher functioning” form of it.  For them (if this is the case, and I am not claiming it is) the right therapists could work with “how” the medical problems affect or contribute to behavior/social ones.  It would be nice to see neuroscience find the causative link between the mind and body, but we are a long way away from that.  The answer for now would be for all disciplines of medicine to utilize interdisciplinary approaches and to work together to promote the best outcome for a person’s overall health.

    So long as there exists blurred and confused understandings of the two “disorders” (making them indistinguishable on a therapeutic level) no parent is ever going to know if they are getting their child the right help that they deserve.

    Until neuroscience can definitively prove the causation of either/both disorders, NO ONE should be boldly recommending that they be diagnosed or treated the same way!

    “HIGH FUNCTIONING” IS A TERM DEVASTATING TO ASPERGER’S SYNDROME

    It is important for me to challenge the overuse of the term “high functioning” as it relates to both Autism and Aspergers.  I do believe that there exists High Functioning Autistic individuals who do not have the same debilitating deficits seen in some children with Autism, although I also believe calling anyone with such a challenging road “high functioning” to be inappropriate as it causes incredibly unjust perceptions by the outside world.

    The term “high-functioning” is the most UNFAIR label to ever attach to anyone who has Asperger’s syndrome (and maybe parents of Autistic children will agree with this as well) because it gives the false idea that some are just less affected by their disorder than another (not true in Aspergers) and that they function “just fine” in the predominantly NT world.

    NO ONE with Asperger’s syndrome is high-functioning in this NT world, in fact, the more “high-functioning” they appear, the greater likelihood they have adapted who they are to fit in and denied or suppressed the ability to actually be themselves.  The most high functioning Aspies out there are likely suffering internally far more than those that isolate themselves and appear to be “lower-functioning” by society’s viewpoint.

    I am not meaning to personally attack anyone’s use of that word, particularly parents, as it is appropriate for what many have been told to utilize in describing a child or adult who does not have the severely debilitating deficits (like extremely low IQ or impaired/absent speech) that can be seen in what was once called Classic Autism.

    It is, however, the very use of the words “high-functioning” as it relates to an individual who should be diagnosed only as having Asperger’s syndrome that we now have a society who is becoming increasingly numb to the term autism in general.  Just click on a news story about ASD (you can find a new one each and every day on one of the major media outlets online) and you will see people constantly posting about how individuals who are just “awkward” are using the term autism as an excuse of sorts.  We are also seeing more parents who have Autistic children becoming resentful toward the Aspie children and adults deemed “high functioning” and expressing their upset over the use of the word autism when they feel their children (who are severely disabled) are now being overlooked.

    CONCLUSIONS

    My conclusions are as follows:  Asperger’s syndrome and Autism (regardless of the functional ability) are NOT the same thing.  Neurology has proven that they are not the same thing and since they clearly have not been heard, there is an incredible need to continue funding the research of both (separately).  Medicine, psychiatry, and other interdisciplinary approaches are essential in providing for the needs of individuals diagnosed with either Aspergers or Autism.

    We need to stop going backwards in science where these two “disorders” are concerned and begin moving forward and finding the biological implications within the brains of those affected.

    There may exist future therapies that can vastly improve the neural synapses that serve to define both Aspergers and Autism.

    For now, cognitive behavioral therapy is the most effective means of creating improved interpersonal relationships and needs to be explored further.

    I am so thankful for all of the responses and comments I have gotten about this blog, especially with how new it is.  I genuinely respect and appreciate everyone’s thoughts and willingness to share personal glimpses into their own experiences.

    I hope this post has cleared up why I believe that Aspergers and Autism are two distinctly different disorders and why I am an advocate for the separation and research into both of them in the future

     

    THOUGHTS?

     


  • ASPERGER/NT MARRIAGE HELP: WHERE CAN I FIND A GOOD SUPPORT GROUP?

    The question every Neurotypical spouse asks at some point

    download
    I am a super big fan of these guys

    Update:  

    I took this post offline for a while for three reasons:  1. I was pissed off.  2.  I questioned if it could truly benefit an NT wife living with an adult Aspie. 3. I did want to endorse spending money on anything about Asperger’s syndrome (in general) unless I could personally attest to the value of it.  So let me explain:

    I went to this forum religiously (for reasons explained below in the original post). I always knew when I posted a question to the members that I would receive some flak and responses filled with sheer ignorance about Asperger’s syndrome.  I always used those responses to inspire why I needed to begin sharing what “I” knew to be true. One day I opted to link my blog post: WHAT ABOUT ASPERGER’S SYNDROME AND EMPATHY? to see how the members would receive my opinions.  I fell asleep after posting it and awakened to a few personal emails that indicated my post had stirred up some hate-filled and bitter responses with ensuing arguments that got nasty (either toward me, or between forum members).  While the emails I received were ones telling me they enjoyed the post, or found it insightful, they also told me they thought it royally “sucked” the entire post had been removed by the forum administrators.  I had no idea that it had sparked all of this emotion, nor did I know it had been removed from the website at the time I read those emails.  I wish I could have stayed awake long enough to know exactly what the context was of all the negativity I had inadvertently instigated, but I never had the opportunity to read any of it because the forum administrators took that away from me.  

    On this particular website, we all write controversial things (as ASD, Autism, Asperger’s syndrome and talking about something as important and emotional as our children does frequently trigger intense feelings).  It is not abnormal for many posts to lead to snarky comments and utter rudeness toward members with opposing viewpoints.  If someone gets particularly nasty, the forum administrators will delete their comment, but not the whole post that fueled the emotion.  

    One of the reasons I kept going back was because the platform was so open, as I believed it was promoting honest discussions that need to occur about a topic so taboo and unknown in society.  This initial reason for being willing to pay to be a member of the group got me thinking.. there I was, advocating to my blog readers to consider this unexpected group (Aspie parents) to help them learn valuable lessons, perhaps they weren’t as “open” as I originally perceived? Despite not agreeing with the majority of information put out on it by the members themselves (not the authors), I was mature enough to look past that and find something beneficial from my membership.

    When I learned my entire post was removed, I felt rather betrayed by the very creators.  I felt that they had cherry-picked my insight and opinion as being “too controversial” to leave up, while having no urge to remove the countless morons out there blaming vaccines and other unproven or ridiculous media-hyped links to Autism Spectrum Disorders.  It was because of this selective censorship that I became angry and took down this blog post for almost four months.

    This pissed off feeling made me question whether or not the recommendation of other NT wives reading what these parents had to say would benefit them or cause them to feel more alienated and misunderstood.  It was because of this pissed off feeling that I decided I would not allow an endorsement that cost money to be made by me if there was any chance it could cause more harm than good.

    Ultimately… after much consideration (and re-reading the original post), I decided that I would open it back up for you to decide for yourselves if there is something to benefit from it. In the end, I still admit this is the only group membership that ever benefited me in any way (despite joining many others in the past).

    While I believe only one of the original founders of Asperger Experts is still involved in the website, I still have to say that it is worth checking out if you are interested in how current members of society who are actively raising Aspie sons (like your husband) are receiving, processing, and making sense of the information they have.  I think it will be beneficial to you to look inside the minds of these parents for many reasons but most of all, the creators do give an interesting glimpse into what it might have been like “in the mind” of your husband when he was younger.

     

    ORIGINAL POST:

    When a neurotypical wife begins their hunt for “like minds” to begin processing Asperger’s syndrome, they often consider joining forums to share their story and get advice.  More often then not, their search begins with reading tons of articles on the subject. When an NT spouse reads these articles, they may think, “Ok, this is good” but then when they look beneath it, realize that upwards of 90% of every response/comment is from an NT spouse who has (or is about to) give up on their marriage.

    What began as a hunt for help turns into a feeling of hopelessness as they come upon more stories of utter negativity and failure.

    I began looking into and following Asperger forums written by Aspies themselves (to avoid the hopeless NT pitfall). I had simply given up on the hostile and broken NT ones and had long-since abandoned the “professional insight” ones (since they never really gave me tangible advice I could utilize).  I thought perhaps going directly to the people who live in my husband’s fascinating world would yield better results.  I figured, if for nothing else, they could offer something the others could not.

    Unfortunately, despite still following many of these writers and loving what they have to say and how they express their difficulties, challenges, successes, and general perspectives… I still came up empty in finding practical means of helping my own marriage.  It was/is sometimes frustrating to read the words of Aspie’s and know that they do not understand what it is that they are doing “wrong” that causes so much angst from the NT community (so they ironically vent equally about NT’s and their cruel and un-empathetic behavior).  I think that it is important for an NT spouse to read what the Aspie bloggers have to write still, and I will link you to some of my favorite websites in future posts that you may also love.

    For purposes of something that might actually “help” you, this is what I opted to do at the end of my internet search for a good forum to join.  I wholeheartedly recommend to adult NT spouses married to a partner with Asperger’s Syndrome to do this:

    Consider finding a DIFFERENT group of people for advice

    I belong to a forum for parents of Asperger/Autism diagnosed children.  In all of my attempts to locate a group of positive people to provide support for my struggles, it was only this group that ever offered it.

    With this private group forum I go to (daily) being dedicated to parents who are desperate to provide a good life for their children (is there any motivation stronger than that?) I get to see people who will never offer advice to “leave” or abandon their children.  This provides me with a new perspective of what it is like to see people who are also met with failure and struggles every day, who continue to maintain an optimistic outlook and strive for “something else” each time one avenue proves unsuccessful.

    Since I hope I have sparked some interest in what group I am referring to exactly, I will let you in on my big secret. This group was founded by two young adult men, Danny and Hayden, who have Asperger’s Syndrome (they call themselves ASPERGER EXPERTS) and honestly… they are absolutely deserving of the title more than anyone else who uses their professional credentials to try to justify being deserving of such a term.

    In ALL of the things I have read and searched for over the past five years, these guys (barely into adulthood themselves) have managed to make more sense of my husband than any adult or professional EVER COULD.  They are phenomenal men who are doing a wonderful service for parents of children diagnosed with Aspergers.  They refer to their forum as an “Asperger & Autism Parent Support Network” but I think by their self-proclaimed title you may see that they are what I consider “straight-up-Aspies” and likely as deserving of the Autism Spectrum Disorder label as my husband (sarcasm).  <—- If you have read my other posts, you are likely aware that I am NOT a huge supporter of the umbrella term ASD (to put it mildly).

    The most incredible thing about these two Asperger Experts?  They are being paid fractions of what the “professionals” are making to spout off all of their brilliance in one useless therapy session!  I pay $14.99 per month to have access to better information and tools than any book I have purchased ever yielded (and I paid far more than that amount per month on wasted literature), so I recommend them to anyone who would like to find a “different” perspective who are also willing to spare some extra cash.

    What do I mean by a new or different perspective?

    The support groups intended to be positive for women married to Aspie men always end up being fueled with advice to get out as soon as possible and limitless stories of their Aspie’s negative behaviors and attributes.  They seemed to want to help one another initially (if you go back to the origins of the forums), but since every effort on their behalf ultimately fails… the only help they can offer in the end is to advise other women to stop wasting their lives and get divorced.

    That is why the perspective of parents who would never allow the thought of leaving their own beloved child is so important to a Neurotypical wife who really just wants help, not tips on running away quickly.

    It was in large, because of these parents that I first began adapting my attitude about my husband John.  I began to consider that maybe I should try to regard him with the same dedication I would give my daughter B, instead of always having one foot out the door.  Since abandoning my child would NEVER be an option to consider; I wondered how my mindset could change if I chose to delete that option for my marriage as well.  

    The only problem with this forum (for an NT wife seeking help in her marriage) and the wonderful insight from these two guys is that they fall short of having a true grasp of what it is like to navigate through a marriage like mine or John’s.  They are the small statistic who has figured out enough to potentially avoid the very dynamic we (and so many others) exist in, and thankfully they are reaching thousands of parents with their insight to help those children grow into successful happy adults like they are.

    Obviously another problem is that, THEY HAVE ASPERGER’S SYNDROME!  They are not going to be able to decipher what that “means” for the neurotypicals in their life and they do not attempt to make sense of that very often.  

    Their focus is on enlightening NTs about how the young Aspie mind receives and responds to the world around them.  They haven’t the insight to enlighten an Aspie to the NT side (obviously not something to hold them accountable to).

    Because of their inability to speak on behalf of an adult NT/Aspie relationship, even with the new found enlightenment they have given me, the path still hits a dead end for my marriage in a lot of ways.  It is one thing to begin to identify and correct coping behaviors and misunderstandings in a person’s childhood and adolescence… it is an entirely different ballgame when we are talking about 30+ years of negative behaviors and belief-systems that are near-impossible to penetrate.

    It is far easier for a parent to influence the behavior of their child than a spouse for their husband.  As an NT spouse, we do not hold the awesome ability to utilize the same consequences for behavior and/or positive reinforcement and rewards that most parents have at their disposal.  In fact, if we offer ultimatums to our adult Aspie husband, we can typically expect a terribly hostile and defensive defiance… which creates the very parent/child dynamic we are so desperate to extinguish in our adult partnership.

     

    Regardless of the inability to speak directly on the topic of an Asperger Marriage, the tools Danny and Hayden give are a phenomenal foundation in any Aspie/NT dynamic and the support group members themselves… priceless!  

    Fair warning:  The parents (mostly moms) in this forum do not mince words and they are unapologetic in their critiques or opinions (I actually find this helpful once I let go of my instinctive feeling of rejection when they disagree with me).  If you are someone who does not handle rejection from outsiders well, tread lightly before you post a strong opinion on here.  If these parents think (for even a split second) that your words are incorrect, biased, or painting a bad light on the children they love… they are like mama-bears protecting their cubs and go for blood.  

    On the flip side, there are no bigger advocates then these parents when it comes to finding answers and help (as misguided and misinformed as they often are).  It is not lost on me that these mothers can become a driving force to altering the current crash-course Asperger/Autism education is on (if they ever get the right information in their hands).  

    Since you will never find a group of people that rally behind one another for a positive cause (to better their children’s future) like these parents, I would be remiss if I did not share with you that this website/forum has helped me.  It is worthy of consideration if you are tired of listening to people who think giving up is the only viable option.


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  • ASPERGER MARRIAGE: WHO ARE WE? (1)

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